Wednesday, July 4, 2018

ERISA/Prudential must pay Disability for CFS

"Washington Post Science Reporter With Chronic Fatigue Syndrome Must
Receive Disability Benefits, N.J. Court Decides"


(May require a free subscription)

On Sat, Jun 2, 2018 at 10:37 PM, Tom Kindlon wrote:
> The full ruling is here:
> <>
> On Sat, Jun 2, 2018 at 10:31 PM, Tom Kindlon <> wrote:
>> Ex-Reporter Prevails In ERISA Suit Against Prudential
>> By Adam Lidgett
>> Law360 (June 1, 2018, 5:33 PM EDT) -- A New Jersey federal judge sided
>> with a former Washington Post science reporter with chronic fatigue
>> syndrome Thursday in his Employee Retirement Income Security Act suit
>> against Prudential Insurance Company of America, which had dropped his
>> short-term disability benefits and denied his bid for long-term ones.
>> [..]
>> Among other things, the judge said that none of the professionals
>> Prudential most relied on to review Vastag's records show they have
>> any expertise in CFS. She said the reviewers seemingly either weren't
>> aware of, or rejected, just how significant a major mark of the
>> disease is — post-exertional malaise.
This condition, the judge said, means that people with CFS who try to force themselves to function actually make themselves worse in the process.
>> <>

Tuesday, June 19, 2018

PBS Audience Award: Vote for Unrest

We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It was an honor to have Unrest premiere on PBS | Independent Lens this past January and it would mean the world to us if we could count on your support for this award-- after all, this film was especially made to serve audiences like you.
Voting for the Audience Award opens today Monday, June 18th and ends on Friday, June, 29th, 2018 at 1 PM Pacific Standard Time. Cast your vote now!
If you found solace in watching Unrest, if you felt seen, if Unrest moved you or your friends, family, neighbors to greater understanding and empathy, please vote and encourage others to vote as well.
Winning this award would mean renewed interest in Unrest and therefore, further visibility for Myalgic Encephalomyelitis. Let's keep elevating ME every chance we get until the neglect and stigma are gone for good.
Let's make some noise for ME! Vote now!
Jen & The Unrest Team

Wednesday, May 30, 2018

Hot Areas in ME/CFS Research 2018

Solve ME/CFS Initiative
Published on 29 May 2018

"Hot Areas in ME/CFS Research: 2018" presented by Anthony L. Komaroff,
MD, Simcox-Clifford-Higby Professor of Medicine at Harvard Medical
School and Senior Physician at Brigham and Women's Hospital Anthony L.
Komaroff, MD, provides the latest installment of "Hot Areas In ME/CFS
Research: 2018".

With increased momentum in research over the past two years, this
webinar is a timely update to his popular presentation from our 2016
series that addressed current understanding of the role of various
systems – including the brain, energy metabolism, genes, and immune
system – in the pathophysiology of ME/CFS.

Friday, March 23, 2018

Finally, you won't be told "wrong diagnosis"

The American ME and CFS Society, a 501 (c)(3) nonprofit, has launched a Crowdrise campaign to raise funds for emergency aid for patients in financial crisis. Many patients are disabled and unable to work. Assistance at the right time can go a long way. AMMES' mission is to help patients and their families in practical ways. This is one of them. Please donate what you can!
If AMMES manages to raise 3000 dollars through this campaign, we will be eligible for a Community grant of 25,000 dollars. All of this grant will go into our crisis fund.
This is the description that appears on Crowdrise:
"Between 836,000 and 2.5 million Americans suffer from ME/CFS. One quarter of these patients are severely ill, and are either bedbound or housebound. Severely ill patients are unable to work, and many are denied disability. The financial crisis generated by a loss of income coupled with rising costs of medical care can force patients to forego necessary care and medication. In some cases, patients may even lose their homes and end up living in cars. In order to assist patients in need, AMMES is setting up a crisis fund to provide one-time grants to patients for specific needs. The funds can be used to purchase a wheelchair, pay a medical bill, hire home care, secure adequate housing, and other basic needs. All applicants will be required to provide written medical confirmation of their diagnosis, proof of financial need, and document the specific purpose of the grant. Where possible, a phone interview will be conducted. (Some severely ill patients cannot speak.) Any patient within the United States and its territories is eligible."


Sunday, March 4, 2018

30th Anniversary

It's the 30th anniversary of my diagnosis.

At the time, I was so excited -- it had a name, that must mean they could fix it.

How wrong I was.  30 years later, still no treatment, still no cure.  Still a lot of people who think I'm just faking or lazy.

Bah humbug!

Saturday, February 24, 2018

ME and Eye

Source: University of Leicester
Date: September 2017. Online: February 15, 2018

Ophthalmic correlates of Myalgic Encephalomyelitis (ME)/Chronic
Fatigue Syndrome (CFS)
Nadia Sultana Ahmed
- College of Life Sciences, Dept. of Neuroscience, Psychology and
Behaviour, University of Leicester


Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a
chronic, debilitating disorder. With the exception of disabling
fatigue, there are few definitive clinical features of the condition.
As a consequence, patients often have difficulty gaining an
appropriate diagnosis. As such, identifying distinct clinical features
of ME/CFS is an important issue. One under researched area of
ME/CFSassociated symptoms concerns problems related to vision. People
with ME/CFS consistently report a range of symptoms related to the
quality of their vision including pain in the eyes, hypersensitivity
to light, difficulty focusing on images, slow eye movements, and
difficulty tracking object movement. However, there has been little
attempt to verify patients' self-reports using objective methods. The
purpose of the experiments presented in this thesis was to determine
the effects of ME/CFS on: (i) performance on a range of tests of
visual sensitivity and (ii) the morphology of the retina. Compared to
controls, the ME/CFS group exhibited reduced accommodation, larger
pupil diameters, reduced colour discrimination and poorer contrast
sensitivity towards lower spatial frequencies. Thinning in the
photoreceptor layers of the retina (the Outer Segment & the Outer
Nuclear layer) was also apparent. These findings support the claims of
people with ME/CFS that they experience problems related to their
vision and its function. They also represent a potential marker of
ME/CFS that may aid in its diagnosis.

(c) 2018 University of Leicester

Friday, February 9, 2018

ME/CFS, NLP and the Lightning Process™ in the Looking Glass

ME/CFS, NLP and the Lightning Process™ in the Looking Glass
by Nancy Blake
Positive Health issue 244 - February 2018

Some extracts:

"Now suppose you have a broken leg, and I am so good at NLP trance
induction that I can stop you feeling the pain.

If I do this, so you start walking on it and don't bother to get it
set and in a cast, you are going to end up with a terribly deformed
and constantly painful leg. Ethical?"


"If you use NLP techniques to get rid of a headache that is caused by
a brain tumour, your 'help' may mean the patient doesn't bother to get
it properly diagnosed, and could cost him his life."


"The judgement about the use of NLP for the treatment of ME/CFS hinges
on whether we believe the psychiatric model…that the original viral
illness is completely over, and exercise is avoided because of
irrational fears…or the medical model which observes the continuing
relapses following exertion and concludes that this is evidence of a
continuing latent infection."


The presuppositions of the Lightning Process™ are the ones which
underpin Cognitive Behaviour Therapy and Graded Exercise Therapy: that
ME/CFS involves only thoughts and beliefs which, if changed, can
result in recovery. The patients' belief that there is an underlying
physical cause, and that exertion can do actual damage is considered
to be false. Treatment, therefore, can be successful if (and only if)
this belief can be eradicated.

The Lightning Process differs from CBT/GET in that adds the use of NLP
techniques to change beliefs and encourage the patient to give up his
protective energy-conserving behaviour, his physical aids, and
enthusiastically engage in exercise.

This would make it very effective indeed if the patient's symptoms
were caused only by unhelpful thought processes.

It makes it potentially harmful if the patient's problems are in fact
caused by a pathogen which is stimulated by exertion, and which the
immune system can only fight effectively if the patient rests so that
all his physical energy is available for the immune system.


In relation to ME/CFS, what are the 'impossible things' one must
believe (and what must one refuse to believe) in order to maintain the
view that ME/CFS is, in Simon Wessely's words, "nothing more than the
belief that one has (ME)"?[4]


You have to believe that people with no previous history of a mental
health problem or of undue complaining about their health, and no
preceding traumatic event other than a mild flu can become completely
incapacitated within days, and continue to be so, simply because of
negative thought patterns about minor symptoms.

You have to believe that intelligent, highly educated, successful
professional people, including professional athletes, can suddenly,
for no apparent reason, become extreme hypochondriacs, whose reports
about their illness are either false or exaggerated.

You have to believe that for such people, the 'secondary gains' of
assuming the role of invalid are somehow greater than loss of their
profession, their income, their home, and often their families.

You have to disbelieve what patients report about their experience,
even though patient descriptions of this very complex disease are
similar across historical periods and disparate geographical
locations. Patient experience, although varied in some ways,
consistently reports that exertion brings on worsening symptoms, and
that continued exertion brings on more permanent and serious relapse.

You have to believe that encouraging or coercing patients into doing
something which is known to make them worse is a 'safe and effective'
way to cure their illness.